Autism spectrum

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There’s a certain kind of clarity that comes from being 40. Well, er – 41 actually but I’ve stopped counting. I have decided that I’m not going to get any older, Ima stop right here at this age.

Well, last year’s age, but you know what I mean.

And by clarity, I mean, self-awareness. I seriously could no longer care less what other people think of me.

Yeah, that’s a lie too. I WISH I didn’t care but my emotions preeeeetty much rule this girl.

Yep. Always have done- probably always will do.

And that’s ok.

Anyway – as I was saying, I’ve learned a lot about myself in these past few years and I’m gonna write about it here so I can read back on it the next time I’m in full blown self-hatred mode and rediscover why its ok to be me.

Firstly – I am aware that I am different to most mothers. I am not great at the whole example setting thing.

My teenaged daughter is usually the one telling ME to mind my language and it’s usually her asking ME to get a grip when I lose it. And my boys have seen me in a puddle of tears on the floor holding onto a glass of wine for dear life and then been there to comfort ME more times than I care to admit.

But here’s the thing: my kids know they could rely on me to be there for them no matter what happens, and that I will love them regardless of anything that they could ever say or do.

So I’m calling that a win. I’m not always perfect, but my love for them is.

I may not always operate in complete coping mode but I am capable of being what they need when they need it most and that’s what is most important.

I don’t always make the best decisions when it comes to parenting but I do always apologise when I stuff up.

That’s also important.

Secondly: I’m a better mother when I spend (a metric crapload) of time away from my kids. And THAT’S ok to admit too. It doesn’t make me a bad mother; it makes me real. Not all mothers want to spend every waking moment with their children climbing all over them and obsess about every tiny aspect of their children’s lives. We are all different. I for one go stir crazy when I’m not afforded enough “Fi” time. And the result of that’s not fun for anyone. BELIEVE me. Working outside the home with long hours is what keeps me sane and helps teach my children the independence that they may not have learnt had they not have been forced into it. I’m not gonna feel guilty about that anymore either.

It’s wonderful that some people can post all over social media about how much they LOVE school holidays and simply ADORE having their offspring home and post album after album of beautiful photos of the amazing artwork, craft creations and outings they have done with the neatly dressed, intelligent, well behaved children, – but that’s not me (or my children) either.

No.

Not even close.

It’s taken me a loooooooooong time (and I’m not there yet) to be ok with the fact that I am not like those mothers.

I abhor craft, I don’t have an artistic bone in my entire body and going ANYWHERE further than the corner store with two autistic boys makes me want to stab myself because it is a hell that most people won’t ever fully experience.

And here’s why:

My kids have zero executive functioning skills. Know what they are? They are the skills that allow kids (or adults) to exercise mental control and be able to regulate themselves. These skills are easily learned and eventually instinctive in neurotypical (or normally wired) individuals and most kids have them down pat by about ten years old.

And by self- regulate I mean, to be able to make decisions for themselves, to instinctively understand what is expected of them in public places and to know how to self-entertain, behave appropriately and in their own best interest.

Put simply: because my boys are autistic and don’t yet have these skills mastered, a simple outing usually ends in one or both of my boys hitting/punching/kicking/poking/slapping each other in the nether region or screaming out something to the tune of:

“I’M BORED AND HUNGRY AND I HATE YOUR HAIR MUM AND YOU SMELL LIKE BUTT AND YOU’RE THE WORST MOTHER EVER BECAUSE YOU WONT BUY ME A NEW GAME AND WHY CAN’T I HAVE THIS CHOCOLATE AND WHY CAN’T I GO TO THE TOILET RIGHT BLOODY NOW AND WHY CAN’T I GO HOME WHERE MY PLAYSTATION IS BECAUSE YOU KNOW I HATE GROCERY SHOPPING AND WHY ARE YOU SITTING IN THE CORNER OF THE SHOP ROCKING AND SOBBING MUM WOULD YOU LIKE ANOTHER WINE?”

Or, you know, something like that.

And when I remind myself that most mothers stop dealing with toddler tantrums at around the age of 5 and that I am still dealing with them in 10 and 13 year olds I remember to stop comparing myself to the mum who took her four beautifully dressed children on a thirty six-hour car trip to see the beach on the other side of the country and stopped at every boutique café along the way because that isn’t – and will never be – my life.

But I don’t want you to feel sorry for me. Just don’t judge me for not being even close to having my ducks in a row. In fact, living this ridiculously insane existence has afforded me a sense of humour that I never knew I had before, and it’s taught me to never ever EVER take anything at face value.

There is ALWAYS more going on in everyone’s lives than what they post on social media.

I’m learning not to compare my off-the-planet home life to Susie homemaker and have come to the realisation that not everyone is as brutally honest as I am.

I may scare a lot of people off with my honestly because it’s often confronting and raw and uncomfortable, but it also filters out anyone in my life who isn’t willing to stick with me through the darker days and has shown me who I can trust and who only wants to be my friend for what they can get from me.

So thankyou to anyone reading this because it means that you’ve stuck by me and I love you and appreciate you more than I could ever convey.

Have a great weekend all. I am spending mine taking my son to the hairdresser to fix up the home hair cut he gave himself (those darn executive functioning skills to blame again). Or lack thereof.

But the difference between now and 3 years ago when I started this blog, is that I only publish a very small portion of what I write here on Wonderfully Wired. Most of it is in journals, on loose scraps of paper or still in my head because I learnt the hard way that people are judgmental. Some people took it upon themselves to publicly correct me, accuse me and made an example of me because I dared to write about things that were slightly controversial, negative about autism or (what they considered) borderline attention seeking.

That’s just the way it is in blog land unfortunately. But I’ve also learnt that if I choose to make information about me or my family public then I have no place in getting upset when I am attacked. I made the choice to put it out there so I have to toughen up and take whatever comes my way. I have withheld a LOT of information regarding Harley because he is now at an age where he is sensitive to how others perceive him and is high-functioning enough to notice that he is different. I am careful what I write because kids can be really cruel at times as can their parents. But despite all that – I really need to write this out today. I need to know that we’re not alone in this nightmarish hell that we’re living and I need to connect to other parents who not just get it but those who really get it.

Lately, we’ve been finding parenting really tough.

Harley is more aggressive than ever before, more panicky and anxious and more volatile as well. We’re at our wits end as to how to help him and the proverbial straw is balancing very precariously on the camel’s back at the moment. His meds are taking the edge off –sure- but the underlying agony and grief that he experiences every day just ‘existing’ in this world is holding him hostage at all times.

I look at him and want to cry, not because I’m angry at him but because I feel so helpless to soothe his personal demons and diffuse his outbursts in time. He told me that his brain is literally driving him crazy, he said that he wants to rip it out and stomp all over it because it drives him mental. He doesn’t want to be ‘different’ anymore and wonders out-loud why he has to have autism because “It just sucks hard Mum”.

I only have to look into his eyes to see the pain etched there, the confusion, the hurt and the bewilderment at this world where he is made to feel like an alien. He told me that he knows that he doesn’t fit here on earth. He said he feels like a freak show and that he wants to die. His OCD has started to get out of control again and he is not only over-washing his hands until they bleed, he is also gnawing at them with his teeth.

“I need to feel pain Mum, it stops my heart and head from being overwhelmed. Every time I look at my hands it reminds me that I am stupid, that I am dumb and that I’ll never be like everyone else. I hate me Mum.”

I am extremely picky over whom I choose to spend time with these days. I can only wear my “everything’s fine and dandy” mask for short periods and I just don’t have the strength for small talk and niceties anymore. I may offend people in my real life with my perceived harshness and flippancy but all of my strength is going into keeping my family together and in one piece and I can’t apologise for that.

I keep putting one foot in front of the other because I have to. I keep soldiering on because I just don’t have the option to quit. I’m in this for the long haul – I will NEVER give up on that kid.

I heard him long before I saw him. The quiet whimpering – the faint sounds of a little boy broken. Slowly I walked down the hallway towards my son’s bedroom wanting to help him but very aware of his need for privacy. He sometimes prefers to be alone and I couldn’t know for sure whether or not he would welcome my intrusion.

As I got nearer to the sniffles I saw two little sock-clad feet sticking out from underneath the bed and I knelt down beside them. I peered underneath the bed and he (alerted to my presence) quickly drew up his legs into the foetal position and held his breath to stifle the cries. He laid there on the cold hard floor boards shaking from the effort involved and my heart absolutely ached for him.

I laid down on my own stomach and awkwardly slid my bulky 38-year-old frame beside his tiny 10-year-old one and joined him underneath his bed. He looked into my eyes – questioning my motives and quickly covered his face with the palm of his hand like a cat who walks past you with its eyes closed thinking that he can’t be seen because he can’t see you. He doesn’t understand the flaws in his logic because he peeked out behind his fingers a few times and each time he looked genuinely surprised that I was still there!

I reached over and gently uncovered his eyes and kissed his wet fingertips. “Would you like Mummy to go away” I asked him.

He shook his head. No, I could stay.

We laid there staring at each other and the tears continued to fall from his eyes but slowly a little smile started to form on his lips and his eyes eventually started to sparkle. At that moment, I was overcome with such love and compassion for this child. He had captured my heart 100%.

I spoke to him again: “How about we climb up on TOP of this bed and Mummy can give you a proper cuddle. We don’t have to talk if you don’t want to, just cuddle if you’d prefer”. He nodded and smoothly and nimbly slid himself out in one simple motion whilst in stark contrast, I clumsily edged my way out smacking my head on a timber slat in the process causing him to burst into a fit of giggles. Sensing my chance I hammed it up with a big “ouch” and rubbed my head. It was perfect because I knew then that the ice was finally breaking.

We laid face-to-face beside each other on his bed with my arms wrapped loosely around him while he fiddled with the gold cross I was wearing around my neck. I watched him for what seemed like hours and said nothing until I could see that he was ready to interact.

“It’s just so confusing Mum” he eventually said.

“I know it is honey” I replied kissing his forehead “I know”.

Another few minutes passed before he spoke again but this time there was more volume and purpose in his voice.

“Things are not having same-ness Mum. They didn’t have a pattern. I didn’t know the next thing and it’s just so (takes a deep breath and pauses) so, well I mean (smacks himself in the head) CONFUSING!” My mouth goes dry as I search for comforting words but he continues without my response.

“My brain is stupid, it hurts because I’m trying to be like the rest of them Mum but I can’t! It’s just no good. I can’t find the pattern. There isn’t a pattern. It’s not supposed to go like that. How come everyone else knows but I don’t?”

His face is etched with pain and uncertainty as he tries to make me understand what is swirling around in his head tormenting him so. I looked up to the ceiling and said aloud: “Alright God – you’ve gotta help me here. I need a translation. I’ve got NOTHING”.

Suddenly all the pieces of the puzzle clicked together like the dry bones in Ezekiel and in that moment it all came to life and made sense. Routine, structure, and predictability – they were all the patterns that he was talking about. He needed to know what to expect but since last weekend – when he had his birthday party on the Saturday afternoon – everything in our house has been out of sync and all over the place. There have been changes that might seem minor to most of us but to him – they are huge. For example; I have started studying again, Lucas has been off school sick, Daddy has been home at nights and Grandma went home after staying for two weeks.

All big changes for him.

The afternoons and early evenings haven’t been the same as usual and have greatly lacked anything that even closely resembles a routine as I madly try to catch up on housework and chores. We’ve eaten dinner at different times and bedtime hasn’t had the same bath-story-bed routine that he’s been used to for ten years now.

I have seriously dropped the ball. I thought back to his words:

“My brain is stupid, it hurts because I’m trying to be like the rest of them Mum but I can’t! It’s just no good. I can’t find the pattern. There isn’t a pattern. It’s not supposed to go like that. How come everyone else knows but I don’t?”

Translated it means that Harley noticed that other people all seem to know what to expect and are able to adapt and manage well whenever things don’t go to plan. He enviously observes how effortlessly other children handle change and wonders what is wrong with him. THIS is where high-functioning autism can be a real pain in the butt. Even as his mother I sometimes forget that he needs so much more preparation and understanding than other children. I forget that the smallest change can catapult him into overload and I have to continue to remind myself of the most important mantra for autism parents to remember: “All behaviour is communication”.

Well-meaning friends, family and teachers often say words to the effect of: “You’ve got to stop pandering to him, he needs to learn how to manage in the big bad world sometime. You can’t always be there to protect him.” Or they tell me not to stop beating myself up for not always being on top of my game. And they’re right – to a degree. But I also think that HE IS ONLY TEN and there really is no excuse. I mean, I wouldn’t ‘forget’ to give insulin to my diabetic child. I wouldn’t remove a physically disabled child’s wheelchair and expect him to walk unaided so why do I think that removing the scaffolding of structure, routine and planning won’t affect my child who is medically diagnosed with a neurological disorder?

I don’t believe that providing the framework of structure, routine and forward planning or making particular accommodations just for him are pandering to him or letting him win – I’m just trying my absolute darndest to help him to believe in himself. One day he will have to make it on his own. It’s true that I won’t always be there and I KNOW that he will be faced with tough situations and decisions when he is older, I am not that naïve.

But for now – I will continue to meet my child wherever he is at be it on top of the mountain or underneath a dusty bed.

These days, I look in the mirror and I don’t feel as old as my reflection tells me that I am. I see the lines, the grey hair, the crooked smile and the dropped face yet I still feel as though I am in my mid-twenties. There are other days where I feel like I’m fifty, but twenty-nine is the magic age that I’ve decided that I am going to be every year from now on. I’ve even got my six-year-old son convinced that this is my real age and I’m surely not going to ruin that with the truth anytime soon!

But the fact is, I am only weeks away from my 38th birthday. Later this year I will be attending my high school 20 year reunion and I can’t decide how I actually feel about it.

This photo was taken the same weekend that I went to my ten-year reunion. This baby is almost 10 and this girl is 13!

I went to my last reunion in 2003 and I was thinking today about just how much has changed in my life in just ten short years. At the last reunion, I had just celebrated my fifth wedding anniversary, I had an almost 4-year-old in Ella and Harley was only a few weeks old. I remember trying to find an outfit that covered my post baby belly to attend that night and worrying myself stupid that everyone was going to think I’d gotten fat. Which is actually quite amusing to me now, because if I could have known then what the next ten years of my life had in store for me, I would have realised that it was such a small and insignificant worry in the grand scheme of things.

For example;

I could not have known that I was going to be diagnosed with a brain tumour almost 12 months to the date from that reunion, or that I would need to wait for a donor to receive a corneal transplant nine months later. I could not have possibly have imagined that I would have another son and that both of my boys would later be diagnosed with autism causing my world to momentarily come crashing down all around me.

***

I can still clearly remember getting ready to out that night ten years ago. I remember sitting on my parent’s couch breastfeeding my little boy and calling out instructions to my best friend who was in the kitchen playing with my little girl. She and her husband had come over for the night to babysit because ironically enough – both her Dad and my Dad were attending their own high school 40 year reunion in another town the very same night!

“Make sure she’s in bed at a decent time, and there is a bottle of expressed milk in the freezer if Harley wakes up. I’ll be home at ten to feed him again”. I called out to her. She stuck her head around the corner and nodded telling me to go and enjoy myself.

I looked down at my little boy who had fallen asleep in my arms and kissed him on his forehead. I was deeply in love with him and this was going to be the very first time that I had left him alone for more than half an hour. I knew that I could trust my best friend with him so I handed him over and skipped out the door not knowing that this precious little bundle would one day rock our little worlds.

The conversations flowed easily at the reunion, I saw people I hadn’t heard from in the entire ten years and caught up with people who I’d actually forgotten all about! (You have to remember that this was all pre-Facebook, so most of us had no idea what each other had been doing since school.)

“So what do you do? What have you been up to the past ten years?” I was asked over and over again.

Each time I smiled and explained that I had just had my second child and that I was taking 12 months off. I chided myself for not having anything worthwhile to tell them even though everybody seemed satisfied with my answer. I remember leaving the reunion feeling like a complete loser and I felt like I hadn’t achieved anything to boast about. I mean, some of my classmates had travelled to far away and exciting places. Some had completed many years at university and most were established in flourishing and exciting careers. I was envious and embarrassed that all I had managed to do was work a few casual jobs, get married and pop out two babies. I felt pathetic and as though I couldn’t measure up.

As I was remembering all of this today, I marvelled at how much water has flowed, no, FLOODED under the bridge since then. I thought about how I was pushed off a short

So much has changed in ten years. My baby boy is almost ten! And I guess I’ve grown up a little too 😉

plank into a sea of unknown that came with Harley’s autism diagnosis. How I had just managed to stay afloat on the tiny island I’d fashioned to keep me safe from the sharks in the water below and how that small island disintegrated beneath me when my third child was also diagnosed. I remembered how long those pesky sharks nipped at my heels every time that I would have a bad day and start to sink again into the murky depths.

Although I have now completed certificate III in education support and am about to start certificate IV, I still have the exact same employment history that I did at my ten-year reunion, so unless I land the perfect job in the next few months, I won’t have any impressive vocational stories to share or achievements to boast about.

But as I sat thinking today, I also considered how things such as my weight, my education and my employment history have lost a lot of the power that they once held over me. I realised that in my quest to be the best autism mother that I can be, I have allowed this journey to take precedence over all those past ideals and that none of it actually holds any major significance to me anymore.

I am who I am. I am who I am supposed to be.

I was meant to be an autism Mum.

While I have many days where I’d happily trade the long nights, the angst ridden meltdowns and the unexplained outbursts, I wouldn’t be me if I hadn’t experienced all these things. I get exhausted from deciphering grunts and groans and the aggression that is directed at me I could happily do without, but these moments have shaped me. They have helped me to become more compassionate. They have allowed me to view the world through lenses that I wouldn’t have had the privilege of looking through had I not been sent down this path.

These moments have helped me to find my inner voice and taught me to speak up for those who cannot speak for themselves. They have shown me how imperative it is to advocate for acceptance and how to teach society why change needs to happen.

And my little girl ain’t so little anymore

If this wasn’t my journey, I wouldn’t have met the amazing fellow autism parents that I am now in contact with, and I probably would have taken a lot longer to figure out why I am here on this earth.

I uttered the words ‘I hate autism’ as recently as last night because some days it is overwhelmingly lonely and difficult raising special children like mine but even so – I am thankful that I get to be their Mum.

And although I worry ‘less’ about my weight these days, I am still in possession of female hormones and scold myself with every piece of chocolate that I pop into my mouth leading up to this reunion. I look at my goal dress hanging in the wardrobe every so often and sigh heavily with regret. But then I remind myself that what I look like does not define me, but what I am, what I say, what I do and what I believe in are what matter the most.

And my Lucas makes 3! He is almost 7.

I believe in my kids. I believe in lovingly teaching them to believe in themselves and encouraging them to be the best that THEY can be no matter what. I believe in teaching them that there’s nothing that they can’t do and that they are every bit as important as the next person.

I’ve decided that I am in fact excited about this upcoming reunion and that I will wear whatever fits me on the day. I will proudly admit that my life is far from perfect and I will walk away from there with my head help high knowing that I am living my life in the best way that I know how.

It wasn’t the best day but it wasn’t the worst day either. It was the day of the swimming carnival at my kid’s school and this year was the very first time that Harley has attended. It’s been the 3rd year that he has been old enough to go but I had no success in even getting him there in past years, so his attendance alone was a cause for celebration.

He announced to me on Monday morning that he would like to catch the bus with his sister (Ella) and so I reluctantly signed the permission slip. I was proud of him but I admit that I was also a little uneasy. Don’t get me wrong – I’m all for helping him to stretch his comfort zone a little and I think it’s good for him to try new things but if I was to be completely honest, I was a little nervous having him experience so many new things at one time.

Attending the carnival for the first time.

Catching a bus with lots of other children.

Surviving a crowded, noisy smelly environment for 6 hours straight with no escapes or safe corners.

But I prepared him the best that I could. And yesterday afternoon I had a chat to Ella and asked her if she would please text me at intervals throughout the day to let me know how her little brother was doing because *I* needed to know that he was surviving.

She promised she would and true to her word, she updated me every hour with messages like this:

God bless her – she is such a gem of a child.

So after receiving Ella’s second text, I decided to go for a long drive and I blasted my favourite music in the car singing along loudly at the top of my voice. Simply: because I could and it’s something that I LOVE doing!

Playing any music at ALL is a luxury that I don’t get to indulge in when Harley is in the car, so today I made the most of it and rocked it out big time.

And I may or may not have belted out some Kelly Clarkson, Alanis Morisette and just a bit of Katy Perry – you know – power songs and all that, but I digress….

But today was just what I needed. I had a great day doing whatever the hell I felt like and managed to refuel myself enough to be able to tackle any surprises that the afternoon may or may not have in store for me.

And thank goodness that I did.

Because when I watched Harley alight from the bus and walk towards me hand-in-hand with his big sister, my heart lunged into my shoes. I knew the face that he was wearing all too well. I could read the anxiety, fear and fright in his eyes and knew that he was trying so hard to hold it together. Bless him. I also knew that we only had limited time before the cork was released from the bottle so-to-speak and that I had to act fast. The rumblings of an explosion were there…. He was moaning quietly and pushing his head into my side. He was flailing his arms around floppily so I grabbed his little hand and headed for the office to sign him out early.

But Lucas wouldn’t leave. He wanted to change out of his swimming gear into his clothes and was refusing to come to the car with me. He started to pitch a fit and I didn’t want another upset child on my hands so I sent him to the bathroom with Ella to change. But they weren’t fast enough and Harley couldn’t hold it in any longer.

So mother and son sat on a step together away from prying eyes while my little boy broke his heart. Tears ran down his cheeks as he alternated between cuddling into me and thrashing uncontrollably. He WANTED to be close to me but he just COULDN’T. His body was fighting him and his entire sensory system was out-of-control. I did what I could but knew I had to ride it out. Eventually he calmed enough for me to carry him out to the car and take him home to his safe place.

**

It was hard on me to drive home watching him wipe away his silent tears out of the corner or my eyes, but I still couldn’t get over the immense sense of pride that I had at that very moment seeing how far he had come.

My boy achieved so much more than I would have ever thought possible today.

He pushed past his own discomfort to display great sportsmanship by going along and cheering on his friends and classmates even though he himself is a non-swimmer.

He dealt with a different format for the day and with not always knowing what was coming next or where his teacher would be at any given time.

He caught the bus like the rest of the kids and went to a pool that he had NEVER been to before and did all this KNOWING that there would be loud noises, lots of kids and strong smells to contend with.

He has gone from a child who refused point-blank to even consider attending the swimming carnival only 12 months ago to a child who achieved SO MUCH personal growth today. And this Mama is so SO proud of him.

And for the record; I am not trying to teach my son to conform, to be like all the other kids or continually expose himself to situations that cause him so much pain and displeasure. Nor am I trying to change him into a ‘normal’ child. I am encouraging him to recognise what I have always known about him and that is that not only will he succeed in life but he will excel.

He can do anything that he puts his hand and mind to and he is amazing, strong and courageous.

And that’s no different to what ANY parent wants for their child is it?

This is my favourite part of today. Watching him decompress and reset his vestibular system by indulging in an old-fashioned game of upside-down TV watching 🙂

I’ll let you all in on a little secret: When people talk to me, write to me or ask me questions, I always go away and analyse the entire conversation and make mental notes afterwards. I have learnt a lot about myself as a parent, friend and person by trying to see things from other people’s perspectives.

A new follower on my Wonderfully Wired Facebook Page asked me just today: “How do you both stay on the same page as to what the ‘right’ thing is to do in a situation?”

I waited almost an hour before answering this because the question caused me to stop and think for a while before I felt that I could answer it properly. I actually laughed out loud when I first read it because from where I sit – we don’t agree on ANYTHING and are failing miserably as parents!

We almost never see eye-to-eye on discipline or parenting. I think he is too harsh and he thinks I am too soft. And our marriage has been through some mighty big ups and downs because of this but we are learning to focus on the child and their needs instead of trying to just be heard (or right) ourselves. So I wrote and told her that there is no right way and that it’s different for every family. It’s about working out what’s worth the fight and what’s not and about choosing to do what’s best for the child. It’s also about educating yourself and discovering the difference between naughtiness and sensory overload, between a tantrum and a meltdown and recognising the times when bailing out is your best option. Despite how you actually feel. (And wow do I struggle with THAT one).

I’m a very social person and having to learn to leave when my son has had enough was a tough one for me. But parenting kids in general (and especially when they have high needs) is ultimately all about sacrifice.

Sacrificing the need to be “right” all the time and sacrificing what you want to do in favour of what your child actually needs. But sacrifice isn’t always a negative word. Sacrifice can also mean: devoting, dedicating and giving.

Most of the time I am prepared to put in whatever it takes now because I know the rewards will make it all worthwhile one day. But there are many days where I still stomp and moan and carry one because “It’s not faaaaaaair, I can’t dooooo this!” And I have spent a lot of time on my knees crying out to God begging Him to make my life simple and take away all the “hard”. I have also yelled out “What did I do that was SO WRONG that this is the life I’ve been given”. So don’t think for a second that I breeze through this autism parenting thing…Or parenting at all for that matter!

But I’ve discovered that anyone who makes the choice to blog about their family and living with autism walks a very unsteady balance beam every time that they write. I have noticed that if I write too much about the hard times – I get criticized for being an attention seeker and for painting my children in a bad light, but if I blog about only the good stuff – there are people who read it and wonder why they can’t get it right and wish that their kids were progressing as much as mine are and wonder what they are doing wrong. I’ve even had people ask me what my secret is???

But here’s the thing.

NO family has it all worked out. NO family gets it right every-single-time and NO family could honestly tell you that autism hasn’t rocked their world in some ways.

And any parent with a child on the spectrum will tell you that often our kids will take one step forward and then ten steps backwards and it’s hard sometimes to stay cheerful and positive when you feel like screaming and throwing in the towel. But I try. And I keep putting one foot in front of the other and keep doing my best because they deserve nothing less.

However – I have learned a new way to measure how we are all doing. And it has NOTHING to do with comparing our life to other families. Even those families with autism because every-family-is-different.

I now look at a situation and ask myself – how does this compare to last week, to last month and to last year? And if I can honestly say that we have moved forward (even if only mere millimetres) than it’s marked as a success.

Things don’t have to be easy and wonderful all the time but I’ve learned that progress is progress no matter how small and insignificant it may seem at the time. 12 months ago we wouldn’t have even have attempted going to Costco but two days ago – WE DID IT!

I’ve put dreams on hold, I’ve opted out of a lot of things that I really wanted to do and almost every day I have to remind myself not to live in regret and for the most part – I am happy. I’ve learned that it’s no longer all about me. I have a purpose and I will do my best to make sure my kids grow up to be successful.

But I’m not going to write specifically about what she taught us today but instead I’m going to write about what I personally took away from the seminar.

Let me flash back to when I heard Sue Larkey talk for the very first time quite a few years ago now. It was 2008 and Harley was only 5 years old and had only very recently been diagnosed with autism. I was attending my very first Tony Attwood autism seminar and Sue was a guest speaker there.

I remember sitting in that crowded auditorium with literally hundreds of other parents, teachers and carers listening what seemed like hours and hours of information, strategies, advice and ideas and I was overwhelmed and distraught to find out that there was so much that I didn’t know and needed to learn to help my boy.

I came home that night and sat in my bed and cried and cried and cried for literally hours. It was almost like I was reliving the emotional distress that I felt when I first learned that he had autism. I was emotionally and mentally overloaded and felt an enormous sense of helplessness washing over me in tidal waves.

I asked myself: How could I possibly ever learn all THAT?

At that first seminar I took very few notes and absorbed only what my brain could handle but there was a handout (thankfully) that I was able to dive into and explore much later on when I had the brain space to do so.

Gradually, I started to seek out information in my own time and strived to learn as much as I could. I wanted so badly to understand the workings of my son’s wonderfully wired brain. So I started observing him at play, with strangers, with friends and in his classroom environment whenever I went in to help and I found that there was an absolutely brilliant child hiding behind his struggles.

In him I recognised my own stubbornness and refusal to be told that I cannot do something and it spurred me on even further. I threw myself into discovering ways to help him to be the best that he could possibly be. I stared down the challenge and determined that he was going to be successful NO MATTER WHAT!

And slowly – things started to become clearer and clearer.

Then I met my friend LISA who is an adult on the spectrum and my eyes were opened to a whole new level of understanding and possibilities. Seeing autism through the eyes of someone on the spectrum is Uh-mazing!

Even today in the seminar Sue played us a few videos and every single one of them was an interview with an individual with autism. Sue recognises that we can learn SO MUCH from those who LIVE with autism personally and can explain it first hand to those of us who are really only textbook trained. She featured Temple Grandin and Carly Fleischmann. (See video below).

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Honestly…..both of these women are remarkable and well worth the time spent watching some of their videos.

Like my wonderful friend Lisa – these amazing ladies have really opened my eyes and increased my understanding of autism and sensory needs in my boys.

But do you know what I took away from today that surprised me more than anything? What amazed me and gave me the boost that I have been needing oh-so desperately lately? And what reassured me that my boys are in fact going to be ok?

Confirmation.

She confirmed for me that my gut instincts are spot-on when it comes to my boys. A lot of the stuff that she shared about was stuff that I am already doing with them. Much of which she suggested, spoke about and taught were things that I am already instinctively applying to our family situation. And these are things that I have learned myself through trial and error and from applying ideas that I have either researched or learnt myself on my own time.

No-one taught me a lot of this stuff – I have learned most of it just by simply following my own maternal gut instincts.

And remember that 4 years ago I was scared out of my head that I was going to somehow fail my child and that he was doomed to a life of mediocrity because *I* couldn’t be the mother that he needed.

~

I remember being told by parents with older children on the spectrum that ‘it gets better’ and I scoffed and rolled my eyes at them. I couldn’t see past the next ten minutes and all I could see was hourly meltdowns, tantrums, hurdles and struggles. I had difficulty believing that it wasn’t always going to be as hard as it was at that moment. But that does really honestly change.

You still experience different levels and intensities of emotions with your child but the battles change and your coping mechanisms increase.

So I want to encourage anyone who is new on this journey and let you know that it DOES get better. It will probably never be easy all of the time but even regular parenting rarely is.

Now let me explain something important here: I am not university educated, I do NOT claim to know everything there is to know about autism and I still learnt a LOT of things today that I didn’t know before. There is always more and more to learn. I am certainly not a scholar and in fact I failed grade 12 because I hated school and never really applied myself so you don’t need to be blessed with super duper intelligence to be a successful parent to these amazing kiddos.

I believe that the most important thing you can give your child is love. If you can love them and accept them just the way they are, you will find that things naturally and gradually fall into place.

It IS overwhelming at first. It IS scary and it IS terrifying when you realise just how complex ASDs are and what they bring with them but you don’t need to know EVERYTHING to effectively parent your child.

You only need to love and focus on your own child and work on helping them. If you love them you will naturally want the best for them anyway and find that information is unconsciously absorbed through applying new methods and strategies.

When I look back to 4 years ago and realise just how far I’ve come without even really trying – I see that there IS a light at the end of the tunnel.

I will NEVER know all there is to know about ASDs because there is so much to learn. But I am in tune with my boys and their needs.

And I know that all of you love your kids too so I’ll finish with one of my all time favourite quotes from Dr Seuss’s The Lorax:

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

Yesterday, Ella and I went to church together and left the boys at home with Paul because sometimes, it’s just not worth the fight. I sat with my dear friend *Hope and as usual, she blessed me with her wisdom, her compassion and her desire to help other people.

We were sitting behind another friend who had her little boy with her who was getting a bit restless so Hope rummaged around in (what we callher Mary Poppins bag) and produced some paper and coloured pens to draw with. She drew an upside down cat and encouraged him to draw too.

The little boy’s Mum sat down beside him and also tried to get him to draw and eventually he picked up the pen and scribbled all over the cat! I giggled and pointed it out to Hope and she smiled and said: “It doesn’t matter – he’s engaging with his Mum, that was the whole point”!

Wow!

Hope probably doesn’t realise what that tiny comment meant to me or how the words rolled around in my head for the following 12 hours or so!

“Engaging with his mother”. I just couldn’t shake it!

I thought about my relationship with my own kids and knew that when it comes to engaging them – I rarely do. And that’s not because I don’t know how to, or because I don’t have the time to, but because most of the time: I don’t want to.

That’s right, I don’t want to……..I’m over it. O.V.E.R!

Most school afternoons I am exhausted within half an hour of collecting the kids from school. The constant yelling, running, jumping, flapping, bouncing and spinning mixed with mindless chatter and monologue-ing just about does my head in. I often develop a headache around 3pm and tense up and usually end up putting myself in a time out! I go into my bedroom and sit on my bed, (or in my wardrobe on the more desperate days) and escape the chaos for as long as I can get away with it!

I’m not really that clueless though – I do know that my kids need to decompress after a long day at school and that they require some sort of loose routine to help them to do that, but organising and scheduling does not come easily to me at all. I fight it a lot more than I should.

But I cannot just tell my kids to “go play” because they simply don’t know how to.

For a child who is developing typically, they are born with play skills that are flexible, spontaneous, creative and also voluntary. Playing comes naturally to them and it’s how they learn about their world. Play teaches children how to self-amuse and be independent when they need to be and helps the child to build confidence in themselves and their abilities.

But, children on the autism spectrum often need to be taught how to play. It sounds strange I know, but children with an ASD often have repetitive, non-functional and rigid play with very limited interests. Because of this they struggle to learn skills to help them to socialise with other children and they don’t instinctively know “how” to play make believe type games. (This is why it’s difficult to engage with children on the spectrum and in my son’s case – why he often explodes in anger because he can’t figure out what he needs to do next or how to do it!)

There is hope though. The best way to engage a child on the spectrum is to find out what they are interested in. Find out what makes them smile, what excites them and what makes them feel safe. And then use that interest to engage with them and teach them necessary life skills through play.

At the moment – both of my boys are mad about Trashies! (Trash Packs).

The trashie army

Our house has been overtaken by them, and a dear friend often buys the boys new ones as rewards and incentives. So this afternoon once we got home and wound down a bit, I asked the boys if they would “help” me to sort the Trashies out.

I asked them if they could help me to put them all in groups of the same colours and to help me to figure out which group had the most Trashies in it and which one had the least. Of course they were in their elements because this type of activity is well documented as being something that ASD children love to do. Grouping things, lining them up and organising are all known to be comforting to individuals on the spectrum. So ‘together’ we sorted them all out.

Because I was playing alongside the boys and not talking to them face to face, they were comfortable enough to tell me about their days at school. They were super-focussed on arranging the Trashies and there was not one single harsh word spoken between them the entire time. This alone is HUGE progress because when you have 2 sons on the spectrum and NEITHER of them possessing very good social skills, play skills or knowing how to play independently – there is always a lot of fighting going on. But not today!

Next we counted them by colour, did some basic adding and subtracting and ‘invented’ conversations between the different Trashies. It was wonderful to see them getting so involved and the sneaky maths homework proved a winner too! (hehehe).

Most days I curse those little trashes that are strewn all over my house and usually I cannot go into a single room without finding one of them on the floor but after this afternoon, I have started to see Trashies in a whole new light!

Granted it only lasted ten minutes before Harley started begging for the TV and Lucas for the computer but it was ten minutes longer than yesterday. And I hope to increase that play time over the next few months as I continue to find new and exciting ways to engage my children.

So for now….I’m keeping some of the trash INSIDE the house.

* Hope is not her real name, but she is the same friend that provided my boys with these wonderful grubby little treasures…She has brought us much hope hence the pseudonym ♥.

I have a few friends who are at university at the moment. They all know that the next few years are going to be pretty full on but they throw themselves into their chosen field of study because they know that at the end of it – they will be one step closer to achieving success. They know that the sacrifice will pay off eventually and it will all be worth the hard work and long hours.

So my friends make the wise decision to arrange their social life around study and learn to turn down invitations that either conflict with their upcoming exams or might possibly eat in to their necessary research/study time.

They become super-focused and their course seems to completely consume them and be their main topic of conversation. They know that if they were to fail an exam or a unit that it wouldn’t be the end of the world but that it would put them one more step behind and that to catch up again it would require double the effort and time. They know that it’s just not worth it.

They know better than to push their responsibilities to the backs of their minds in favour of having a good time now. And they also know that it won’t be like this forever so they push through so that they can not only succeed but also flourish.

I admire them so much for their dedication and resilience.

It’s been suggested to me that I spend too much time thinking about autism and talking about autism and researching/reading about autism and that I would be better off spending the time that my children are at school doing something – anything that is separate and unrelated to autism. Because apparently – I have allowed autism to consume me and allowed it to depress me, and that it has made me not a very fun person to be around.

And I understand why people would think that way but honestly, as unfortunate as it is that I’m seen that way: I know that this kind of thinking only comes from those who don’t live a life like ours.

And explaining it to people who already have their minds made up about what they think autism should look like or how much time I should dedicate to it daily is as futile as explaining what childbirth feels like to a man.

People can empathise, they can say all the right things and read all the right literature that they can get their hands on, but they will never ever truly understand it unless they live with it 24/7 as we do.

We were never given the option to ignore autism or downplay the difficulties that it often presents because this is our life. We aren’t afforded the same luxury of pretending that it isn’t really all that bad. Honestly: I would seriously LOVE to step away from this life for a few hours a day but I know deep down that to do that I would be putting myself in a position where I would surely fail the afternoon exam.

And yes, like a Uni student who chooses the good life over responsibility – life wouldn’t come to an end – there wouldn’t be an unrepairable problem if I laid off the intensity, but it would definitely put me further behind in the sense that I would be unprepared and ill-equipped to deal with what may or may not be thrown at me.

Life with autism isn’t a series of multiple-choice questions that you may be able to fluke and guess all the right answers to. Autism is extremely un-predictable. And autism is a life-long neurological disorder – not something that will be over after a few dedicated years of study. Information regarding autism and helpful strategies is ever changing and rapidly advancing and I don’t want to just scrape by in these life exams – I want to get high distinctions and really know my stuff so that I can give it my kids my absolute best shot. I owe them that!

I don’t ever know what kind of drama I’m going to get as I drive to school each afternoon to collect the children. It is usually intense and it highly overwhelming but it is what it is so I need to be prepared.

***

And while I’m on this subject, I’d like to ask how many of you have met my youngest son Lucas?

See this little brown eyed smiley boy? He is 6 years old and thriving in his very first year of school. He is reading and spelling above his age level and is an absolute delight to live with.

He was diagnosed with Aspergers Syndrome last year, which places him on the higher functioning end of the autistic spectrum.

In fact – his presentation of autism is so mild that I honestly don’t know if I would have even have noticed his quirks at all if his older brother wasn’t already diagnosed and I therefore knew which indicators to look out for.

Lucas has only ever had one meltdown in the supermarket. I can take him almost anywhere without a problem. He is obedient, agreeable and generally unaffected by loud noises, crowds and a lot of activity, He doesn’t require the same level of routine and structure that his older brother does and he transitions to new situations extremely easily. He is generally an absolutely easy child.

And a lot of families have a child with autism that presents in a similar way to Lucas. There are a lot of kids just like him out there and that’s wonderful!

But unfortunately, there is a huge misconception that all children on the spectrum are like Lucas and that parents like me who write about major supermarket meltdowns, screaming matches, violent behaviours and family crisis are just trying to extract sympathy at the expense of their children.

We are accused of painting an incorrect and highly inappropriate picture of autism and that we are a disgrace to the autism community. That we are cringe worthy even.

And I understand that. Honestly I do. Because if both of my boys were like Lucas, I would probably also feel the same way were I to read one of my blog posts about a day in the life of Harley. If I was only blessed with a quirky child who didn’t struggle with every little part of the world that they are forced to live in – I can understand that my writing seems overly woeful and self-focussed.

But you see, we also live with a completely different and more difficult presentation of autism as well. We have Harley who is plagued by anxiety, major sensory issues and OCD and I know that there are also a lot of parents out there who deal with a child who presents exactly like Harley. They would love to have a Lucas but instead they deal with a lot of the same stuff that we do.

These parents are also misunderstood and judged both by their peers and families and even sectors of the autism community and also know that unless you live with the major strife, angst and tension that we all do –you really have no idea and therefore no right to pass judgement. Yet they are judged. Frequently.

These are the families that I mostly write for. These parents who throw their hands up in the air screaming “WHAT NOW” every time a new hurdle presents itself. These parents who are at their wit’s end trying to stop their family from crumbling before their very eyes and these parents who would give anything for a full night of sleep.

These are the parents who write to me thanking me for showing them that they are not alone and that there is hope and the families who also endure harsh judgements and well-meaning but hurtful advice.

Truthfully: we honestly thought that by age 9, our son would have grown out of the major meltdown stage. But they don’t seem to lessening in frequency or intensity and we thought that the older that he got – the easier that he would become because EVERY ONE kept telling us that.

But you know what? He’s not! He’s really not! Sure there have been major breakthroughs and massive progress (all which I’m truly grateful for) but when you’re looking at the bigger picture we still have a very long way to go.

And at the end of the day it has had to come down to this for me. (And I apologise in advance if this comes across harshly as it’s not my intention):

If my writing and my accounts of our life offends, upsets or annoys you – by all means, click on a different blog. I cannot write about someone else’s reality, I can only share things as I see them. I do not write to cause controversy, I do not write to sensationalise my life and I definitely do not write in an attempt to procure sympathy for myself by describing every single supermarket meltdown.

This. Is. Our. Reality.

If you think I write unrealistic descriptions of autism as YOU know it, you are allowed your own opinions and I will probably never change your thinking so I’m not going to try to. But I’ll leave with a quote from one of my favourite writers Stuart Duncan who is a father of a child on the autistic spectrum because it pretty much sums where I’m coming from perfectly.

“Autism is not an opinion, It is not politics. It’s not religion. It’s not about you or me and it’s certainly not about you versus me”.

I had a coffee with a close friend this morning and as we always do, we chatted, we laughed, and we shared stories for a while. And then the conversation took a different direction and she asked me a question that I have been mulling over for most of today.

We were chatting about my blog and she asked me how I think I would be (coping) if I didn’t work through my emotions and struggles via blogging. At first I giggled and rolled my eyes because the thought of me without a release valve is an extremely frightening thought, but then I realised that writing has absolutely taken the edge off my emotional frazzledness. (See that – I just invented a word!)

And then this afternoon, my brain went on a completely different tangent altogether as I started thinking about how I would have reacted if someone would have told me how my life was going to turn out 20 years ago. So I’ve decided to dive headfirst into the old blogging idea of writing your younger self a letter and I have chosen the age 17 because that’s 20 years ago from the age that I am now.

Ready?

Good. Cos I’m not!

Dear Fiona,

You will eventually learn to like your name. You will never love it but you will one day actually tell people your real name when they ask. You think it’s funny now when you tell people it’s Beryl and giggle at their surprised faces, but it will get old fast.

So, do you see those people that you’re sharing the school playground with? Yeah, well you don’t have to be friends with all of them after school finishes for good next year. Some of them you will lose touch with and you won’t care at all, but others will always hold a special place in your heart and you will reconnect with them when you’re all grown up. They will mean more to you then than they do now because age brings new perspectives.

And your parents? You think they’re old and don’t understand you but you really need to know just how much they * do* love you. I mean REALLY love you. So much more than you could ever realise. One day you will have children of your own and only then will you actually “get” it.

After you leave school, you will move a long way from home because you think you know better than anyone but guess what? You don’t.

You will get yourself into some mighty fine messes and your parents will dig you out every.single.time because they love you that much. You are stubborn though and it will take you a long time to realise this and thank them for it.

After spending another 2 years doing some really stupid stuff like jumping from job to job and hanging out with the wrong crowd you will eventually tire of the rebellious lifestyle. But do you remember the story about the prodigal son in the bible? Yeah, well good, because that’s kinda who you become.

You will eventually go home with your tail between your legs and move home again until you get back on your feet. And your parents take you in with open arms and love on you and encourage you to right your broken relationship with Jesus. It will be the best thing that you will ever do.

Your Dad will teach you that if you have God in your life; anything else is just icing and that you need to look to Jesus for happiness because a man will never provide what only God can.

He will teach you that all men and women are flawed by their human-ness and will ultimately fail you at one time or another because of this, but that God will never let you down.

You will never forget this and there will be times in your life that you hold fast to this teaching because people will let you down but you will only be disappointed – not destroyed.

You will marry and it won’t always be smooth sailing, but you chose to put your hope in God so you’ll survive every storm intact.

You will have 3 children and they will bless you, frustrate you and complete you all at once.

But it won’t be easy. Two of your children will be boys and they will both have autism. You will fall apart at first but surprise yourself by picking yourself up and carrying on despite your heartbreak and lack of faith in yourself.

You will lose friends once the news gets out and it will hurt, but all will not be lost because much better and more loyal friends will replace the void that they left.

You will experience great loss in the death of your beloved Dad, great heartache in watching your children struggle and great pain as you endure a lot of personal health issues but you will survive them all and come out a stronger person at the other side.

Eventually, you will learn that you can find happiness and beauty in the small everyday things if you just stop long enough to notice them.

Autism will give you the ability to appreciate things that other people take for granted and bless you with the desire to be a better parent.

One day, you’ll read this letter back and you’ll smile, you’ll laugh and you’ll wipe away stray tears that inevitably fall, but you will know that you have done the best that you can with that which you have been given.

And you will continue to rejoice through both hard times and good because you KNOW that life is what you make of it.